Have a Heart!

A cadaver donation is a gift of life but willing do-gooders are hard to come by. So availability of transplantable organs remains abysmally low in India, especially in the north. But help might be on the way: the government is close to modifying the law, NGOs have stepped up awareness programmes across the country and social and emotional misconceptions are on the wane. An in-depth report

Though not everybody is lucky. Anant Kumar, 58, from Kanpur, passed away in October waiting for a liver in a Channai hospital for almost a year. His children still can't come to terms with his death. They were hopeful that their father would be back soon. But it was not to be. “It's hard lesson to learn. I have decided that I will donate my organs,” says Anant's son, Prateek, who has just turned 18. “A friend of mine died two years ago in a bike accident. I know, that if his parents had known about organ donation they would have definitely done it,” he adds. “If so many other people had known what I know now, may be my Dad would have lived,” his voice trails off.

Reports mention that every year we have almost 80,000 potential cadaver organ donors in our country as nearly 70 per cent of India's 1.4 lakh accident victims are diagnosed as brain dead each year. Organs from about only 100 are retrieved, making the percentage of cadaver donations a dismal 0.3 percent. More than 10 lakh people suffer from end-stage organ failure and only around 3,500 organ transplants are performed every year. At least 10 people in the country die every day for want of an organ, and every 10 minutes a new name is added to the never-ending list of people waiting for an organ.

The human organ transplantation law came into existence 17 years ago, but till date the country has seen a less than 1,500 cadaver donations. Most such cases have been from South India. Pallavi Kumar, executive director, Delhi-NCR, MOHAN Foundation, an organisation that works extensively in the southern states, says, “There is lack of awareness and inadequate hospital preparedness. Cadaver organ donation has the best numbers in Hyderabad (1195) and Tamil Nadu (744), where politicians, social workers and showbiz celebrities are part of the movement.”

“There's an indefinite waiting period for cadaver organ donation. In my department, people registered since 2004 are still waiting for an organ, ” says Dr SK Aggarwal, professor and head, department of nephrology, All India Institute of Medical Sciences (AIIMS). For cadaver liver donations, the country is able to meet only four per cent of the requirement.

“Of 20,000 people who need liver transplants, of which 2,000 are children, we manage only about 800 or so in a year,” Dr Anupam Sibal, group medical director and paediatric hepatologist, Indraprastha Apollo Hospitals, said at the annual meet of Indian Society of Organ Transplantation.

“The main challenge is to convince the family, given weak laws on the issue."

On October 17, Seema Khan, 32, became the 26th patient to get a heart transplant at All India Institute of Medical Sciences (AIIMS). As per media reports, the seven hour operation was conducted by Dr Balram Airan, head of the cardiothoracic and vascular surgery department, and his team.

In 2007, Seema was diagnosed with dilated cardiomyopathy – a condition where the heart becomes too week to be able to pump blood properly. The heart transplant was recommended by the doctors when Seema became constrained to the bed, as her lungs could not handle even the slightest movements. Her husband, KP Khan, 39, is a Delhi-based businessman, who worked from home to ensure support to Seema. Three months ago, the couple had registered at AIIMS for receiving the organ. Many patients actually do not go for a transplant and prefer fighting a losing battle without the same, Seema went ahead. It was reported that the couple’s 12-year-old son Sahil researched the net to try and find all information about the surgery that could assist his parents.

An organ transplant comes at the end when all options have run out. And if you thought that only heart or eyes or kidneys were being transplanted, you’ll be surprised to know that from ears, bone marrow, pancreas to even skin tissue is transplanted. Age or gender do not matter as much in organ donation as matter the consent of legal guardians or parents in case of minor donors.

Dr Sunil Shroff, founder of MOHAN, says, “The problem is mostly within hospitals as the logistics of cadaver organ donation requires a lot of team work, fine-tuned cross co-ordination among departments, perseverance and patience.” There are some misconceptions in north India among both the doctors and hospital management. For people cadaver donation is a difficult concept to accept. But if brain-dead patients were well looked after and everything possible was done to save their lives – you have a family that was happy with the treatment in the hospital and if a trained counsellor approaches the family for organ donation – at least 50 per cent would agree. “The old myth regarding a donor being born in the next life without the organ he/she donates has slowly disappeared. Says Dr Shroff, “In our study, none of the families that did not donate had this in their minds as a reason for not donating.”

As confirmed by Apollo Hospitals in their media release, “Abhilasha, a 16-and-a-half-month-old baby, became India’s youngest cadaver organ donor in 2009 when her parents decided to donate her organs after her death at the Apollo Indraprastha Hospital, New Delhi. Abhilasha was diagnosed with biliary atresia and was in need of a liver transplant which could not be performed because of her underlying neurological condition.” Apollo’s Dr. Sibal commented in the media release, “Abhilasha and her parents came to us from Bhopal for a liver transplant but a CT scan of her brain revealed that she was suffering from hydrocephalus. Her neurological condition had to be resolved before a liver transplant could be offered, but sadly, due to worsening liver function and deterioration in her neurological condition, she could not undergo a transplant.”

Yes, as government orientation also changes, public-private partnership is being encouraged in changing civil society’s preconceived negative ideas about organ donation. NGOs like Sunday Friends in Sion, Mumbai, who have dedicated themselves to work with the public for eye and skin donation have also learnt to give critical post-death counselling support. Says Yogesh Doshi of Sunday Friends, “Only carrying out awareness programmes among the population is not enough, what is required is the presence of collection centres. Collection centres for eyes, skin, blood, liver, kidney, all are in acutely low numbers stretched over long distances. Time is critical for collection after death. Doctors who go for eye retrieval should also be trained for skin.” (Skin can be retrieved within 24 hours, eyes within six hours).

As per a Times of India report, Brihanmumbai Mahanagar Palika's Sion Hospital, which operates India's largest trauma ward, has shown that an annual collection of over 200 corneas, a hundred skin donations (for burns victims) and an encouraging number of kidneys and livers is possible. The Times of India report also puts up a relevant question about why then are the others failing, “especially since the 1994 Human Organ Transplant Act has clearly defined a protocol for handling 'brain-death' in hospitals and allowed cornea collection after home deaths.”

Veena, a transplant co-ordinator with MOHAN foundation, attributes the success story of the south to factors like enterprisisng and dedicated hospitals, the media which spread the word and politician and celebrities who influenced the public. Says Veena, “Recently actor Vijay attended an event organised by the BBC, Big FM and our foundation, where 52 of Vijay's fans pledged their organs. Earlier, actress and director Revathy had pledged her organs. Then there was veteran actor Shiva Kumar who had pledged his organ. Politicians and celebrities make a sincere effort to be present at any such event, which acts as a huge boost for the public here.”

Yogesh Doshi of Sunday Friends says, “The kidney and liver donation scene is as bad in the western states as it is in any other parts of the country but a large number of people from the Gujarati and Marathi communities have pledged skin and eyes, especially after awareness programmes that included a walk through the burns ward at different hospitals.”

He adds, “Bollywood actress Sonam Kapoor’s grandmother wished to donate her body. A very noble thought, but really not useful as the hospitals around the country everyday get a huge number of unidentified bodies. There is already a shortage of space for bodies. But if one would pledge their organs after death, it would make a huge difference to a lot of lives.”

Recently, ace batsman Gautam Gambhir pledged eight of his organs at an event organised by the Apollo Hospital in New Delhi. Gambhir said, “Thousands die every year for want of organs and I feel through initiatives like ‘Gift a Life’ we can do society a good turn by bridging the gap. I appeal to the media to create awareness about organ donation. I would like to urge everyone to donate their organs.” Gambhir has pledged to donate his kidney, heart, liver, small bowel, eyes, lungs, pancreas and tissue.

The newly modified Organ Donation Act recently passed by the Lok Sabha and Rajya Sabha, and awaiting the President's consent, is expected to include stricter punitive measures for illegal transactions. At the same time, the implementation of this Act is expected to give a jump start boost to the organ donation process, providing formal structures that may be centralised on an all India basis for efficient functioning. But how well will the Act be able to change the social views towards organ donation, is another story altogether.

But as they say, well started is half done. There have been many cases across India where people commit suicide simply because their organs have stopped functioning and they have no recourse – and in fact, in some cases, no knowledge that something like organ donations can exist. From 12-year-old girl, Mumpy, (who poisoned herself in a West Bengal village saying that her kidneys should be used for her ailing brother and her eyes for her dad's vision), to Pooja (whose father, despite wanting to donate her kidneys and eyes, could not due to lack of relevant medical infrastructure), cases are aplenty justifying an urgent action in this area.

Worse is the case in the rural areas, where the concept of organ donation is completely absent. Brojo Roy of Ganadarpon, Kolkata, says, “Although Ganaodarpon was set up in 1985, we have had only one cadaver organ donation in the last 26 years. It was this February, and that too was not successful in saving the life. Administration has been the biggest road-block. The organ transplant Act came in much later in 1994-95, which was accepted by the then West Bengal government.”

Roy, who is also the national secretary of National Deceased Donors Transplantation Network, which was set up in 2006-07, in Chennai, Karnataka, Maharashtra, Gujarat, Delhi, Hyderabad and Bengal, says, “Although it has done exceptionally well in the South, Bengal has scored a big zero.” Another big factor that Roy points out for this failure is the crafty business plans of several multi-national companies. “A heart valve bank was set up at RG Kar Medical College and Hospital in 2009 but it isn't operational yet. As mechanical heart valves are easily available and recommended by doctors, we know that the MNCs are putting pressure to sell their valves and not letting the bank take off.”

Dr RK Srivastava, director general of health services (DGHS), government of India, speaking at MOHAN Foundations' 4th annual transplant coordinators workshop in October 2011, agreed, “Things have improved somewhat over the last few years, but overall cadaver organ donation is still negligible. There is no other way but to create awareness about cadaver donation.”

“According to the law, we can't take a patient off the ventilator unless the family agrees even if the patient is brain dead,” says Dr Manav Wadhawan, surgeon, liver transplant unit, Apollo.

The Organ Transplant Bill also might provide a newer front for action. The health ministry may include a voluntary disclosure in the driver’s license where the driver needs to confirm whether (or not) he wishes to donate his organs in case of an untimely demise. This simple procedure has radical ramifications, to the extent that every new license applicant will become a potential organ donor.

Without doubt, India is decades behind the West. The US formed its National Organ Transplant Act in 1984. The act had then itself made trade in organs illegal. But what the US Congress did in 1984 was to institutionalise organ sharing through a government authorised non-profit agency, the United Network for Organ Sharing. This centralised the national registry for organ requirement and donation. Clearly, there are many things India can learn from the West, especially the US, in this regard. The faster India smartens up, the better it will be for those in dying need...

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The real heroes of this programme are organ donors and their family members. They come from all stratas of the society. I just thought that your readers should also know that MOHAN foundation counselor's have done almost 70% of all donations in the country and that amounts to almost 600 donors. The problem in hospitals is that there is no identification or certification of brain death. If the doctors did this there could be more organ donors.